Winner, Winner!

These past 3 weeks have been kind of a blur. Week before last, I had severe nausea. No vomiting. But let me tell you, the nausea kicked my butt. I missed a couple of days of work, and it was a huge pain to get into my doctor’s office. I saw her PA and he prescribed me an anti-nausea medication along with Tama -Flu. He told me that most likely I had picked up a bug. And since I am a teacher, this seemed plausible. Except for the fact that my left elbow has been hurting daily, my left knee has been hurting, and there’s the nausea to top it all off.

I took all of my meds as instructed. Then last week, I caught a cold, I guess. Luckily, I already had an appointment with my doctor that I had made months in advance and forgot to cancel. This time I had all of the above plus lower back pain and the incessant cough. After xrays for my back and a check-up, I was diagnosed with Bronchitis which I do get occassionlly.  I was sent home with antibiotics and a day off from work. Before I left the office, my doctor ran a CBC as well as a Lyme test. She does this almost every 3 months to see what if anything is showing up. You can check out more information about Lyme disease testing here.

Winner-2-copy

Honestly, I didn’t think twice about the bloodwork since it is done so regularly and most of the time, not much changes. This time, however, I am a winner of the Lyme contest! I tested 100% CDC positive for Lyme. Again. I have not had this result since I tested almost 3 years ago to the day when I was first diagnosed. Yet, this is not a new infection. In fact, this is the SAME infection as I have had for several years now!

I am sure this is why I have felt yucky these past few weeks with no relief.

My guess is that since I was taken off of the antibiotics in November, the bacteria have now come out to play. Oh, Borrelia burgdorferi, you are definitely a worthy opponent! See, this bacteria is very smart. It can and will leave the bloodstream to hide in tissues, joints, muscles, brain, nerves. Anywhere it can burrow to be out of harm’s way. It can also build cysts around itself for defense.  Anyway, NOW WHAT? My doctor put me on a Z pack. But that is only for 5 days. What am I doing about this for the next 3 weeks until I see her again and my other doctor out of town? As you can see, I’m a little freaked out about it all. I have a call into my doctor to check on this treatment protocol and in the meantime, I am going to see a Rheumatologist who supposedly treats Lyme. We’ll see.

All I know is I have to keep trying whatever I can to get rid of this infection. It has reared its ugly head at a time I thought I could move beyond traditional medicine to treat and boost my immune system. But it has proven me wrong for now. I hope all is well in Bloggerland. Take care and make sure you always assume ticks are out there whever you live!

Peace – B

 

 

Tell it Like it Is

Well, my people, it is Sunday afternoon. I’m really happy I survived this past week. I hope all of you did too. I am feeling much better today. Thank you all for your support. Today, I was pretty productive if I do say so myself! After a week of being too sick to do anything besides lay in bed, I was up and fairly active today. And no nausea! Which makes this day even better. Since I was way behind on grading, I told myself that if I could knock that out, I could come and write here. It was a great incentive!

I’ve been thinking a lot about this blog, and its focus. Yes, the focus is on Lyme disease and more specifically, my own personal experiences with treating and living with this disease. Over this past month, I have run into some people on social media and people in in my day to day life who also deal with a chronic illness and that, for the most part, has been a wonderful way to connect. However, it has also made me reflect on my decision to begin telling others about my illness. Coming out of the closet, so to speak, about having Chronic Lyme disease.

When I was first diagnosed with Lyme disease, I told my immediate family and my boss. In the beginning, while I knew I would have to treat for awhile since I had been sick off and on for about 3 years before the diagnosis, I had no idea that this might be a chronic illness for me. And, as I was so very sick back in 2013 when I found out finally what was going on, I thought it only prudent and honest to explain what was going on to my boss. The support was overwhelming. I also shared with a few colleagues who are dear to me. Otherwise, no one else knew, and I was happy to keep it that way. In my head, I felt that telling other people was a burden to them. It almost felt like by telling them, I was making excuses about why I couldn’t keep doing everything I had been doing. Being sick, to me, was a sign of weakness. Not that I thought that about other people. That only applied to me. Always the perfectionist, I am way harder on myself then on others (although I am sure my students would beg to differ!).

This strategy, the one of silence and limited sharing about my health, worked for a bit. Well, almost 2 years. And while I did make progress in treatment, I just could not continue with all of the responsibilities I had at work. I was in a leadership position and a club sponsor. These along with teaching 5 upper level junior/senior classes every day. I just had to make changes and move some things off of my plate so I could focus on improving my quality of life. This treatment thing was taking much more time than I had anticipated. Making the decision to no longer sponsor the club I had started back in 2008 and then also stepping down as a leader, these were tough, tough decisions. I struggled with feeling less than, incompetent, weak…oh, the list goes on. Reorganizing my priorities was a challenge. But I knew that I did not want to end up sacrificing my work by becoming more ill or vice versa. Something had to give.

bull

Taking the bull by the horns, I relieved myself as club sponsor and my leadership position at the end of last school year. But in order to do this, more people were going to have to know the reasons why I was making this decision. Uncomfortable to say the very least, at least for me. I’m not big on sharing private things unless it is with close friends. In order to move on though, I did indeed share the basics about my health issues with my colleagues and my boss. I am chronically ill at this point, I have good times and then I have some really bad times, such as this past week, and I cannot make it to work. Communicating with others what was/is happening to me has become a huge relief.

Looking back, I honestly can say that I wish I had done so earlier on. Being more open and honest about my health has actually led to some great conversations with others. It has humbled me in ways I never knew. The kindness and understanding people have is truly amazing. Do I still have days where I feel like a burden? I sure do. But opening up has been a truly important step for my recovery, I believe. Thank you all for joining me on this journey!

Have a great week! -b

Nobody Said it was Going to be Easy

TGIF! Wow. What a week. I really hope yours was better than mine. As I have mentioned in some of my previous posts Turbulence of Lyme SymptomsFire in the Hole, and Derailed, there is a lot of inconsistency in how Lyme will manifest itself each and every day. There are some things, in my case, that stay pretty constant such as daily headaches, joint pain, and fatigue. But then there are those other issues that crop up from time to time, I guess maybe they are flares?, and it is impossible to prepare. What’s the saying, the devil is in the details?

thermometer-temperature-fever-flu-medium

And so last Sunday, I started having severe nausea. It lasted the entire day. I couldn’t eat, sleep or do anything. I just laid in bed, trying not to move around. The moving made the nausea worse. Indeed, it was a day where I just wished I could get out of my body for even like 10 minutes to get some relief. I chalked it up to eating some jalapeno sausage that morning; I knew I shouldn’t have eaten it but it was delish but soooo not worth it.

Unfortunately, no. The illicit sausage was not the problem. On Monday, when I tried to get up to get myself ready for work, I felt really nauseated. Then, the headache joined in. There was no way I could make it to work, let alone teach all day. Monday and Tuesday were more of the same. In the meantime, I was trying desperately to get into my Lyme doctor (LLMD) but there were no appointments available- for the entire week. Whaa? They were very clear that they could NOT fit me in even if I came in when they opened and waited. When I explained again my symptoms, the front desk told me that a nurse would return my call that afternoon. That was Tuesday. By Wednesday evening, no one had called me. Although I was able to get up and go to work on Wednesday, by that afternoon the nausea was back rearing its ugly head. Now, please do not think that I have an entitlement issue. I realize doctors are extremely busy and overbooked. I realize that there are other patients out there who also need to get in for a visit.

On the flip side though, this is my doctor who is treating me for Lyme disease. I can’t just go “anywhere” to get treatment. Other doctors, and almost all here in the South, are not trained on Lyme nor do they actually believe it exists here in Texas. This is the state of the medical options we have for Lyme here and in way too many other places in the US. In fact, Lyme is endemic to Texas. Check out this research done by Texas A & M University “Lyme Endemic to Texas.” Thus, going to another doctor is really more of a waste of time than anything. The ER was an option if I started having other issues, but mostly it was the severe nausea that was the new thing. All of my other symptoms are dealt with in the daily grind; they ebb and flow. But the nausea. God, it was (is) the worst.

It feels like I need to throw up (sorry TMI!) but I can’t. That kind of nausea. No vomiting though. I tried to stay very hydrated. I tried eating Saltines off and on. Yet, about 30 minutes after eating or drinking tea or Sprite, hello tummy monster! Anyway, I emailed my doctor, and I was able to get in yesterday afternoon. Supposedly, I have a virus. I say supposedly because honestly, I think it is more Lyme related than anything else. But I took what I could get which at this point was to get some sort of relief from this symptom. I was prescribed Tamiflu and anti-nausea meds and told to come back next week if it was still going on. Today was better because of the anti-nausea meds, but I’m still having experiencing the nausea.

This is how the Lyme bacteria works. It is a very stealthy and intelligent. According to Lymedisease.org, “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. If not treated as soon as infected, then the chances of it reproducing and getting into every system of one’s body is extremely probable. Now granted, not everything can be attributed to Lyme. But for me, most of the time, my symptoms are directly related to Lyme disease.

Again, I hope you all had a much better weekly journey than I did. Take care – B

 

 

 

A Rallying Cry

When first diagnosed with Lyme disease, and after learning more about it, my attitude (if indeed I had one; I was extremely sick) was one of “OK, I got this.”

When my doctor said that most likely Lyme had been in my system for awhile, perhaps 10-20 years before it wore me completely  down, and that it might take awhile before I would start feeling better, I thought “OK, I got this.”

300RallyCry

When I passed the year mark of being in treatment, and I was not feeling much better, I still believed, “OK, I got this.”

Now, after almost 3 years of treatment, after endless months of medications and supplements, after having a PICC line, after thinking at times when I have been so very ill that I might die, or that I want to die to get some relief from these symptoms, after giving up so many things (activities, trips, relationships), I still know in my heart that  “I GOT THIS.”

Do you have a rallying cry or something you can tell yourself when things get tough? Please share!

Peace – B     P.S. I had to add the other 2 photos for sure 🙂

BraveheartRallyCry

My Bed is my Bestie

Totally sad, but true. Since Saturday, not much has changed. My bed is my Bestie. I don’t even know how many hours I’ve spent in bed feeling not so bueno. Yesterday was more of sleeping, a few loads of laundry, reading, resting. I did manage to get out of the house, only because I had to, and so I drove around a bit near here and took some pictures. It was the Big Event this weekend, at least for moi.

01.10.16Cows
Winter sky of blue

This time of year it the most beautiful to me. I think it has to do with the crystal blue expansive skies, the golden colors mixed with grey and brown. It’s cold. But not the tepid cold. More of a biting cold. The kind of cold that makes your eyes sting. No wind though. Just pure perfection. The beaches are also my favorite this time of year. The ocean stirs no matter what is happening on shore. And empty, the beaches are empty of people which is total bliss. Only the birds and the sea creatures are scurrying around. Hearing the waves lap, the seagulls squabble, feeling the rigid breeze is all inspiring.

 

But I didn’t go to the beach. The nearest one is about an hour plus away not even considering traffic, and hey, I can barely make it to the front door. No can do. This morning was just more of the same. Headache, stomachache, body pain. My alarm screamed at 5 a.m. and so did all of my body. This Monday was so not happening.

Winterfield.jpg
January 2016

 

It’s disappointing to feel terrible enough that I have to take a sick day. I know that is what they are for, but in the past, I would take a sick day and then feel better. Now, I take a sick day and just pray I can handle the rest of the week, whether that is 4 more days or just one. It’s frustrating. What did I do today? I ran the dishwasher, did a load of laundry, and walked out to get the mail. Otherwise, I spent the rest of the day in bed with my BFF. We snoozed, watched some t.v. and did a smidge of reading. Sounds delightful to many I’m sure. But all the while, the Lyme played in the background, the pounding headache, the sore joints, the brain fog, and the stomach issues. Constantly moving to escape the pain if on one side too long, I have 2 heating pads going. I thought about adding a 3rd but that is a little excessive and truly ridiculous. And the not knowing if the next hour or day will be better? That is the most frustrating. This unpredictability of this disease is why I am trying to do my best to just relax and enjoy the times when I do feel decent. There is no “storing” up feeling good nor energy. Both things come and go, flitting in and out like a hummingbirds. So quickly, I can be at about 80% then, bam, 20%. So it goes.

Hopefully, though, now that I rested today and I was good about not being too pissed at myself, I can go to work tomorrow and be productive. Sorry BFF, you’ll have to handle the rest of the week alone.

Until next time, my people, peace and joy to you and yours – B

 

 

Accomplishment for Today?

Make that a zero for accomplishments today!

Pretty much nothing. I have been lazy all day long. Or honestly, resting. I did get two loads of laundry done, and I paid some bills online. Other than that though, I spent most of the day in bed with the heating pad and the puppies.

This was our first week back at work after Winter Break. While it went well and I have no complaints, I am wiped out. And I try not to worry about the next close to 18 weeks this semester; it is difficult not to. It isn’t productive at all, and I know this, so moving on.

ChristmasOwl
image from http://www.myowlbarn.com

Also, I have been without the BB drops I have been taking the past 7 weeks for about a weekish. This was mostly due to my own inability to plan ahead. I just started back on them last night. I’m trying not to lose ground, so I am back on at 12 drops twice daily. We’ll see how that goes!

The weather here which has been damp and cold, is causing me stiffness and lower back pain for most of the week and even more today. At least I will blame it on the weather. But who knows if it is the weather or a Lyme flare or both? Ah, the mysteries of Life!

Oh, wait, I did go outside, and believe me it was mega windy and cold. No snow here though, and so that makes it much less of a big deal for sure. Deciding to move the 2 bags of birdseed, 35 pounds each, into the storage shed was a large task for me. But the bags have been either in my car trunk or outside the gate to the front yard for a solid 2 weeks. Moved them inside the gate, into the wagon, filled all of the feeders, like 5, and then moved the bags into my mom’s little storage shed (she lives next dorr and we share about an acre and a half). There you have it. The big action for today! At least all of the birds were impressed and happy.

It may freeze tonight but it is kind of cloudy out. If it clears off, we’ll get a freeze tomorrow night for sure. Wish me luck that I get more done tomorrow. At the very least, I will have to run into the small town near us and get a coffee maker. Mine took a dive today and well, there is absolutely nothing worse than not having that Juice of Life cup of coffee when I rise. It ain’t pretty people. I hope you all had a waaaay more productive and less painful day than I.

Until we meet again – B